The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No

by Carl Elliott

Shocking cases of abusive medical research and the whistleblowers who spoke out against them, sometimes at the expense of their careers. Carl Elliott is a bioethicist at the University of Minnesota who was trained in medicine as well as philosophy. For many years he fought to expose a psychiatric research study at his own university in which an especially vulnerable patient lost his life. Elliott’s efforts alienated friends and colleagues, and the university stonewalled him and denied wrongdoing until a state investigation finally vindicated his claims. This experience frames the six stories in this book of medical research in which patients allegedly gave their “consent” to participate in experimental programs they did not understand, many of which had astonishing and well-concealed mortality rates. Beginning with the public health worker who exposed the Tuskegee Syphilis Study and ending with the four surgeons who blew the whistle in 2016 on lethal synthetic trachea transplants, Elliott tells the stories of insiders who spoke out against such abuses, and often paid a terrible price for doing the right thing.

Genres: Nonfiction, Science, History, Medical, Medicine, Health, Health Care

368 pages, Hardcover

First published May 14, 2024

About the author

Carl Elliott is a professor of philosophy at the University of Minnesota. Trained in medicine as well as philosophy, Elliott is the recipient of a Guggenheim Fellowship, a National Endowment for the Humanities Public Scholar Award, the Cary and Ann Maguire Chair in Ethics and American History at the Library of Congress, a resident fellowship at the Rockefeller Center in Bellagio, and the Weatherhead Fellowship at the School for Advanced Research in Santa Fe. His writing has appeared in The New Yorker, The Atlantic, The New York Review of Books, The New York Times, Mother Jones and The American Scholar. He has been a visiting faculty member at the Institute for Advanced Study in Princeton, the University of Sydney, and the University of Otago in New Zealand, where he is an affiliate of the Bioethics Centre.

Reviews

[Mary Elizabeth Campbell · Rating 4 out of 5]

Incredible! The introduction is rough - naming Judas as a whistleblower is a mess, but the content of the book is a must read. It'll upturn all your thoughts about medical ethics.

[Krissy · Rating 4 out of 5]

I laughed at the end line about not forgetting his enemies. I'm not sure what I expected here, but ended up with informative rage reading. This is a well put together book that is heartbreaking in its descriptions of inhumane liberties taken with patients across various studies.

[Amber M · Rating 5 out of 5]

Absolutely amazing read. Should be required for incoming med students.

[kylie · Rating 5 out of 5]

I was so excited to read as soon as I found this gem, soon to be published. It did not disappoint.

History - RECENT history - is fraught with unethical experimentation and medical liberties taken by ~ most often ~ white men in power. From eugenics to simply doing nothing because one guy decided he was smarter than everyone else, people have been dying in the name of "progress" without their consent. Elliott meets with several whistleblowers, and to my astonishment discusses that huge blowback from simply doing the right thing. No good deed goes unpunished I guess.

I fully believe everyone should read this. If we do not learn our history, we are doomed to repeat it. And the world is already jacked up enough at the moment.

[Rohini Murugan · Rating 2 out of 5]

The book is three fourth ramblings and one fourth actual good stuff about all the different unethical ways that clinical research experiments have been done. I don't know why I need to know a detailed psychoanalysis of a whistleblower or about the concept of honor or the one too many rambling paths into vaguely related fictional stories. Would have been a better read if I didn't have to skip past the rambling bits.

[Corvus · Rating 4 out of 5]

Probably a longer review later, but this was an interesting mix of memoir, history, ethics, and sociology mixed together and captured very well what happens to folks who speak out against the group, especially if the group has a lot of power and one is fighting it alone. Left me feeling both validated and depressed.

[Erin Welsh · Rating 5 out of 5]

The history of medicine is filled with stories of unethical experimentation (which continues to this day), and whenever I read about a case in more detail, the question in the back of my mind is: how? How could someone decide to enact these abuses and how are they permitted? This book delves a bit into those questions, but its central focus is more about the person who brings these harms to light - the whistleblower. This book takes readers through various medical abuses of the 20th and 21st century and the individual (or individuals) who took a stand against them, often at great personal risk and sacrifice. If you are looking for a detailed breakdown of medical abuses in history, this may not be exactly what you want (though the overviews are very well-written and helpful). But if you are interested in a thought-provoking and philosophical discussion of the motives of whistleblowers and the fallout they experience, this is a fantastic work.

[Laura · Rating 4 out of 5]

Excellent book about why blowing the whistle in general, and in particular in medical research, is always going to be a Sisyphean task, that will most likely mercilessly crush those few brave and moral enough to shine a light on abusive medical practices. Carl Elliot was a whistleblower himself--and exposed an unethical study taking place at the University of Minnesota that enrolled patients in mental crisis on an industry-funded study that lured patients in with threats of unmanageable bills less they join the free study. Elliot admits from the beginning that he is a bit bitter about the whole experience, and although he wasn't fired (he had tenure) he was vilified and punished socially for 'betraying' the institution. He discusses at length the industry of fear, entitlement and belonging that are created in most academic institutions; he then highlights the qualities of most whistleblowers, and discuses the importance of maintaining honor, and avoiding shame (which unlike honor is something we can experience alone). Ultimately he presents a few strategies by which whistleblowers can give themselves a chance to succeed (with the most important note being on the importance of not being alone). His whistleblower experience makes the whole experience so much more personal--but it also in my opinion took it a bit to the extreme in a few situations. Elliot seems to believe that all consent forms are shams--and while there is a lot of room for abuse, I disagree with him. I currently work with doctors on writing protocols. I get paid regardless of whether the protocol fails or succeeds. The majority fail. There are SO MANY steps and provisions, including template language that has to be in absolutely every consent form for cancer research at our center and that language is not positive. We emphasize multiple times that the patient will likely not benefit from the trial and can die (we run early cancer trials, so we can only accept candidates who have very advanced cancers; plus the drugs are early in the discovery phase so we don't know yet if they work in humans). All the trials I've worked on had a ton of preclinical work. Most patients join a trial because they want to help future generations of cancer patients, and in a few select cases they can also get better--but most of them don't and surveys indicate that many don't expect much benefit if any. I've definitely identified room for abuse, but things are so much more controlled at the moment in my institute. It's also not true that internal review boards (IRB) don't care about deaths; I was helping a colleague put together a report at the end of a trial, and we had 4 deaths that year. In the previous years we only had one. The IRB immediately jumped on it and wanted details on every single death. And sadly, 3 of the 4 were people whose cancer had progressed and died because of the tumor (they'd been on trial for a few years), with only one case was potentially attributed to the drug (a complication that was already known; note cancer drugs are much more toxic due to the nature of the disease). Also, I get bombarded every other week with reports of serious side effects from other trials, so there is a lot more care and caution, at least in cancer research. No doubt that if a bad researcher were to take control of a trial, the process of stopping them will not be easy and is likely to bring a lot of pain and ruin to a whistleblower (we also get training every year about where and how we can blow the whistle). But I think that many people may leave this book completely disillusioned with medical research, despite the fact that it has been getting progressively safer and has produced some great leaps in recent years. What we need is a massive reform in the medical system, to bring it closer wherever possible to other systems that have slowly addressed prior failings. Aviation comes to mind. And even though a plane is very different from a complex human body, the incentive to report failure with little repercussion, implement strict SOPs and procedures and slow down medical training while decreasing the machoness of it could definitely benefit patients--and doctors too. We definitely have too many doctors who think themselves superior to patients. See for example my recent review of "Complications" by Atul Gawande (https://www.goodreads.com/review/show...).

[Ali · Rating 5 out of 5]

"Pesando shakes his head when he remembers how Thomas fired him. “You’re not a team player,” Thomas said. Being a team player apparently meant following orders. When I asked Pesando if the criticism stung, he said no, absolutely not. “Because I wasn’t a team player, right? The team is committing Nazi war crimes. Do I want to be a team player? No.”"

"Part of what makes medical training so unnerving is how frequently you are thrust into new settings in which you don’t really know how to behave. Nothing in your previous life has prepared you to euthanize a dog in the physiology laboratory, or help deliver a round of electroconvulsive therapy on a nonconsenting patient, or attempt an episiotomy on a sixteen-year-old girl without anesthesia. Is this normal? Are we supposed to be doing this? Maybe, but maybe not. It’s hard to tell. Your gut reaction is often a combination of anxiety, revulsion, and social discomfort. Most people learn to suppress that reaction. A rare few learn from it."

This is a good book to read for our increasingly surreal times. Elliot here pursues the stories of whistleblowers as well as the gross medical abuses they exposed. His aim is to try to understand, what motivates whistleblowers, but also, underneath, the perennial question of how people could be otherwise. He is (at least seemingly) upfront with his interests: he became obsessed with exposing the death of a young man on his campus undergoing an experimental trial into a psychotropic drug the researchers had a financial interest in. And he wants to understand why he couldn't let it go and why stuff like this happens in the first place.
To do this, he tackles some of the most well-known scandals - the Tuskegee syphilis trials, the Willowbank hepatitis murders - and a few I was less familiar with, including a very hard-to-read Karolinska Institute scandal; the Protocol 126 bone marrow experiments in Seattle; Dunedin's 'unfortunate' experiment, and a 1960s military trial which drenched cancer patients in radiation.
I'm not sure how much I buy any of his theories in the end. He has this weird thing with honor which doesn't seem to have unpacked a bunch of his own cultural bias in coming at. But honestly, it doesn't matter. He comes across as refreshingly human, and one who, like the whistleblowers he documents, is more interested in making a difference than being heroic enough to admire.
Perhaps the most interesting part of the book is how, despite most of these whistleblowers being radically different in personality, background and, to some extent, politics (lefties* were over-represented), they all talked about their experience as if they had not had choices. Their motivations were about who they were, the oft-repeated ability to look at self in mirror, the sense that the choice, if it was that, was between self-annihilation or a rejection of this.
There are clues for how to make it easier for people to stand up to horrors. A big one is the role of a support system, the higher success rate for those working in a group as well as the need for solidarity in the face of the inevitable attacks. All of these whistleblowers suffered career losses of significance - many were outright fired. They lost friends, money, status and comforts. There is no Hollywood endings here (and remember, all of the cases covered were eventually exposed, the actions 'vindicated' - it is shuddering to think how bad things are for those who never bring what they are seeking to light).
There is also much to ponder in how we got here. Elliot covers some of the basics, including Milgram's experiments and what the conditions those showed were that helped people resist (he annoyingly states that Milgram went on to test this - actually, Milgram made his tests increasingly likely to comply, obsessed with proving most people were bastards. The tests with most quoted result were after more than a dozen rounds in which most people did not electrocute). These include having another person in the room, and not having the authority of an Ivy League logo to back up the study. It is not the motivations of the arseholes who designed these murderous studies that linger, however, but the legions who have all of the reasons not to do anything about it. There are so many characters here who, once the practices of, I dunno, inserting fake broken organs into people, or blasting them with lethal radiation, or interfering to stop their late-stage syphilis being treated, have been exposed and the practitioners discredited, then say the equivalent of "yes well, I did think that was a bit off really" while protesting that they wouldn't have been listened to. Which maybe they wouldn't have - but the glory of our protagonists is that they would point out, it isn't the point. It isn't about the difference you make outside, it is fundamentally about the difference you make to yourself.
And it is important to remind ourselves that there are lines not to cross. Elliot makes the point that medical training inculcates young doctors into a set of values - one that includes taking power away from patients, and assuming that it is important to fake expertise rather than withdraw. It is by these degrees, he shows, that we get used to things that should horrify us. With Willowbank, while the wrongdoing that got the place was that they deliberately infected patients, the reaction that hit the news was simply from the journalist seeing the conditions the children were living in, an environment of filth and violence, in which rape was so tacitly accepted it had a nickname.
The book never implies there are easy answers to any of this. And repeatedly points out that the obsessiveness of whistleblowers can make them difficult friends, lovers and even witnesses. But it is an assertion of humanity, of how much it matters to continue to value yourself and others, that kindness and respect matter as values. Because without them, we might all end up watching kids get tortured for profit.
*In one of those things I think I had forgotten, there is a direct line from the Young Lords to the exposure of the Willowbank scandal, as the young doctors that worked with them in running a NYC hospital move across to Willowbank...

[Mirissa · Rating 2 out of 5]

Maybe this is on me, but I thought this book would be more about the cases being presented. Instead, it was mostly about the whistleblowers themselves, “the price of saying no” alluded to in the subtitle. But the thing is, I don’t think the book needed to be 300+ pages and cover six different case studies to hammer home that cost. As such, it quickly became a boring and repetitive read. I feel bad saying that because the trauma that everyone involved in these cases endured should be something I read with respect, but it was a slog to get through instead.

The conclusion and introduction in particular were rough to read, very stream of consciousness. It was also weirdly religious (Judas is a whistleblower?????) and philosophical and moral. There was also a lot of name dropping. I guess I just didn’t care for the author’s writing style.

[Katie · Rating 4 out of 5]

The Occasional Human Sacrifice describes abusive cases of medical trials and the whistleblowing that came with them. How ethical are trials even when consent is given? Is the consent fully informed? How can some people continue to sweep something under the rug that has deadly consequences? Throughout the book, Elliot explains six cases which had questionable mortality rates as well as the impact, which is often far too negative, this has on the people who blow the whistle.

[Sarah Burton · Rating 3 out of 5]

Parts of this were interesting and parts were dry and rambling.

[Benjamin Lipscomb · Rating 5 out of 5]

Elliott is both our liveliest and one of our most probing writers on biomedical ethics. I will be thinking for some time about his observations on the characteristic motivation and sufferings of whistleblowers. Among the hard lessons of this nonetheless captivating book:

1. The familiar diss on people who refuse to dirty their hands--that they are indulging themselves, putting their moral purity ahead of other, more pressing concerns--collides with the fact that this is *the* characteristic motivation of whistleblowers. They see and are moved by the pain of sufferers. But what propels them to action is their sense of honor and shame: the sense that they couldn't face themselves if they did not speak up. Takeaway: if you think whistleblowing is important, some respect is due to the outlook that drives it.

2. Whistleblowers suffer moral damage as a result of their actions, even if (a significant if) they achieve their ends: stopping the abuses, discrediting the abusers. Not only do they lose basic trust in the integrity of institutions and of people generally, but they tend to become morbid and obsessive, even paranoid, as a result of their almost inevitable experience of being resisted and disbelieved. And institutional insiders go on shunning them, even when their testimony is vindicated. However important the cause, whistleblowers should expect to sacrifice themselves in consequential ways. The Hollywood story of the brave whistleblower who is unfazed throughout the experience and is eventually celebrated while the abusers and the complicit are disgraced never happens.

3. There is no such thing as a successful, solitary whistleblower. One of the hardest kinds of aloneness to bear, Elliott observes, is moral aloneness. Successful whistleblowers always have a small cadre of people at their side, embarked with them on the project of exposure. One of the most important functions of these people is helping the whistleblower inhabit a coherent, hopeful story of what they did, notwithstanding the personal cost and the generally ambiguous results. Again, the fantasy of the brave soul standing against the world is just that: fantasy.

The title, then, is subtly ambiguous. The human sacrifices in question are not only the unwitting subjects of unethical experiments but also the (even rarer) people who speak up for them.

Highly, highly recommended.

P.S. Glancing through other reviews, I see that the negative ones are mostly from people who were expecting a book like Bad Blood, focused on the details of one or more unethical experiments. Know what you're getting into, then. You will learn a lot about a disturbingly wide-ranging set of wicked experiments. But this is a book about what it takes to resist evil. If you're not interested in that...well, I'm not sure what to say. But the book will frustrate your expectations.

[Jan · Rating 5 out of 5]

For 40 years in Alabama the U.S. Public Health Service conducted the Tuskegee Study of Untreated Syphilis in the Negro Male. With enticements including free meals, healthcare and burial stipends, but with no informed consent and no effective treatment, hundreds of African American men were studied to see how syphilis progressed. A San Francisco PHS venereal disease named Peter Buxton heard about the study and devoted years to getting it stopped. (Buxton died at age 86 in May 2024.)

Many people thought this only happened under the Nazis and couldn't possibly have continued into the 1970s, but it did. And this is one of the successful whistleblower stories.

Carl Elliott is himself a whistleblower, who now teaches at the University of Minnesota, the institution responsible for psychiatric research that led to the death of a young patient. For years, the university refused to take any responsibility until a former governor joined the effort and a state investigation found and published the truth.

In this book, Elliott writes about whistleblowers who similarly refused to be quiet despite losses of friends, colleagues, and sometimes their careers. The medical research projects he studied included whole body radiation, injections of cancer cells, the infection of disabled children with hepatitis and more. The research locations ranged from the U.S. to Australia and Sweden. There is plenty of shame to go around.

This book could have been just a series of horror stories and it is that, but Elliott interviewed many of the whistleblowers about why they risked their livelihoods and more to fight the medical research power structure. Was it for honor? Did they have hero fantasies? And what happened to them after the fight? What constituted "winning" and what attempts at safeguarding research subjects resulted, if any?

This is a fascinating book and you don't have to have gone to medical school to appreciate it.

[Cole · Rating 3 out of 5]

"The mystery of human evil is the mystery of human weakness."

A fairly easy straightforward book that deals with an interesting subject from a unique view. This book is more of an introspective journey the author took as part of their own reflection on their experience as a whistleblower and trying to make sense of the experience for themselves and others. It's certainly an interesting question to pose as to why some (one might say a statistically significantly small number of) people will choose to act against a group or organization when it is doing wrong? The an exploration of the psychological fallout could have been more developed in my opinion, but it was still worth a read.

As a self note there is something interesting for me personally in this question - If only because one of the diagnostic criteria for a lot of neurodivergent diagnosis is a hyperdeveloped since of right and wrong and a need for the world to adhere to a sense of justice - and how isolating that can make you feel in the world even in day-to-day situations.

[Peggy McCoy · Rating 3 out of 5]

I slogged through this book. It was tough to learn how brutally people were treated when they questioned the ethics of these human experiments.
Some of the chapters seemed to last as long as the whistleblowers' ordeals. Nevertheless, it was important information.

[Austin Lasater · Rating 4 out of 5]

Less about medical malpractice and more about how difficult it is to be a whistleblower while using medical research as the conduit. It was riveting, but I'm not sure how to feel at the end of it. The more you dive into these stories, the more you open yourself up to cynicism, so reader beware.

[Cameron Clayton · Rating 2 out of 5]

Seems as though I‘m not the only one to be deceived by the title. This is a book that is less about medical experimentation and more about the mentality of a whistleblower: a topic that does not warrant a 300+ page text, in my opinion.

[Alana · Rating 5 out of 5]

SO good! I had heard of several of these research studies, but the level of detail and thoughts of Elliott were incredible.

[Jacqueline · Rating 5 out of 5]

Fascinating read for those interested in medicine and medical research. The book was a mix of memoir, personal reflections, portrayals of whistleblowers and stories of breaches in medical ethics themselves. I liked the more personal tone and focus on understanding the psychology of whistleblowing but if you’re looking for pure stories about the incidents themselves just a warning that this won’t be that!

[Madeline Arnoldy · Rating 2 out of 5]

Interesting topic bad writing

[CanadianReader · Rating 5 out of 5]

“In novels and movies, the shape of the whistleblower narrative often resembles what Kurt Vonnegut called a ‘man-in-a-hole’ story. In these stories, someone gets into trouble and gets out again. Vonnegut used to plot the shape of the man-in-a hole story on a graph: a straight line takes a deep dip and then returns to baseline . . . [People] . . . love the story because of its reassuring message. Job survives his ordeals and is rewarded by God for his faithfulness. Dorothy defeats the wicked witch and finds her way back to Kansas. The whistleblower exposes the truth and brings down the corrupt organization. The man gets out of the hole.

Missing are the lingering effects of being trapped in a hole. In the hole you turn inward. The world outside the hole fades away. Alone with your thoughts, you think of nothing but yourself and how to get out of the hole.”

Carl Elliott is a professor of philosophy at the University of Minnesota. He specializes in bioethics, the philosophy of medicine, the medical humanities, Wittgenstein, and moral philosophy. Although he’s been an academic for many years now, that wasn’t the original plan. He’d initially pursued a career in medicine, graduating with an MD in 1987. It didn’t take him long to discover that he didn’t like the person he was becoming as a physician, and he changed course.

Early in this honest, personal, rich, and compelling work about whistleblowers who expose medical wrongdoing, the author observes that “Anyone reading a book about an ethical issue must decide whether they trust the narrator.” I implicitly trusted Elliott. Having trained in medicine and worked in the area of bioethics, he’s knowledgeable about how physician scientists and medical researchers proceed and he’s well informed about the pharmaceutical industry’s “perverse influence on medical research.” He himself is a medical whistleblower. He spoke up about a tragic case at his university’s medical centre. He’s articulate, insightful, introspective, and admirably honest about his own failings.

In 2003, Dan Markingson, a young man on a locked psych ward at Fairview, the University of Minnesota’s teaching hospital, was enrolled in a drug study of Astra Zeneca’s Seroquel. The research was being run by Markingson’s treating psychiatrist, Stephen Olson. While in the grip of full-blown psychosis—vulnerable, confused, and delusional—Markingson had been admitted to Fairview. Against the wishes of his mother, Mary Weiss, he was pressed to sign a consent form for participation in Olson’s research. Over the next several months, Weiss saw her son deteriorate dramatically while on the antipsychotic drug.* She attempted to have him removed from the study multiple times, and she was repeatedly dismissed. Ultimately, the young man used a box cutter to slash his throat while lying in a bathtub.

After his suicide, Weiss filed an unsuccessful lawsuit against the university—a judge had ruled that as a state university the institution had statutory immunity against this type of suit. The emboldened university struck back at Weiss, demanding that she pay $56,000 to defray its legal expenses. Elliott was appalled by his employer’s demand, regarding the action as petty cruelty. In the years that followed, he dug into the case, accessing and examining medical records, depositions, expert testimony, unsealed memos, and university records. He now acknowledges that he naively hoped that by exposing the details of the Markingson case, public pressure would mount in support of an external investigation and that the university would be moved to make amends. Thwarted in his efforts nearly every step of the way by an unyielding institution, perceived as a self-righteous fanatic, and abandoned by colleagues and friends at the university, Elliott became acutely aware of the impacts of whistleblowing on one’s mental health. This book, a consideration of the experiences and psychology of a number of medical whistleblowers and the shockingly unethical research they exposed, was clearly born of his personal ordeal. Writing The Occasional Human Sacrifice , Elliott says, constitutes his attempt to pull himself out of the hole.

While whistleblowers’ motivations and experiences are not uniform, the author’s research (which includes many interviews with those who’ve exposed wrongdoing) does point to certain commonalities. Elliott notes that those who speak up are possessed of a powerful moral compulsion to act. The explanations they provide for doing so in the face of significant risk are not founded on complex internal arguments about right and wrong but on staying true to an inner voice. The determination to remain honourable people and their shame at being complicit in wrongdoing are also important factors. Whistleblowers are often idealistic: they feel revulsion at what they see, and they cannot understand others’ willingness to tolerate corruption and cruelty. Hardened cynics, on the other hand, are certain the system is rigged and feel no inclination to sacrifice themselves. And whistleblowers do make sacrifices. Regarded as traitors, they’re usually defamed and ostracized. Many lose everything: career, family, friends, and financial stability.

Elliott’s characterization of whistleblowers is not without nuance. He points out that there’s a gray zone between those who act honourably to expose injustice and malicious, aggrieved others who simply want to retaliate. When it comes to whistleblowing, revenge “is rarely irrelevant.” As a case in point, he discusses the experience of Canadian hematologist-researcher Nancy Olivieri, who disclosed her concerns to patients being treated with a drug for thalassemia, a blood disorder involving abnormal hemoglobin. Olivieri also defied the pharmaceutical company (Apotex) that produced it by publishing her alarming study results. In short order, she was fired from her administrative role at the University of Toronto, which at the time happened to be negotiating a major donation from Apotex. Olivieri acknowledges that she was fuelled by rage that her attackers could get away with it: “revenge and accountability were strong motivators.” In her case, after a fight of many years, a comprehensive settlement with the university was reached. This is not usually the case. The corrupt regularly walk free.

Elliott covers a number of historical and more recent medical whistleblowing cases, among them:
-the infamous 40-year Tuskegee Syphilis Scandal (in which poor Black men were left untreated for syphilis, even when penicillin was a known remedy—basically so that autopsies could be conducted on them)
-1970s research using institutionalized “mentally defective” children who were deliberately infected with the hepatitis virus;
-the abuse of patients at a major cancer research center in Seattle;
-total body irradiation experiments that caused the premature deaths of mainly poor, Black patients (not intended to improve their odds of survival but to determine for the Pentagon how much radiation an American soldier might be able to endure.)

There is much more, each case raising slightly different issues, each whistleblower experience offering up a variation on themes about the evil that lies in human weakness, bystanders’ resistance to rocking the boat even when others are suffering, and people’s tendency to defer to authority and hierarchy. Elliott also includes discussions of (the inadequate) oversight of medical research and the legal protections available to some whistleblowers. He cites numerous sources on these subjects and alludes to works of literary fiction to illustrate other points throughout the book.

Elliott’s material demonstrates that the spirit of the Nazi doctors lives on. He observes that physicians have an extraordinary amount of power over people, many of whom are very vulnerable due to illness or disability. It is a fact that academic medical researchers are typically protected by their institutions while whistleblowers are punished. It is also true that victims are seldom compensated or even apologized to for harms suffered. Then there are those who simply stand watching on the sidelines. Fully aware that something is wrong, they’re insufficiently troubled to do anything about it, knowing that employers prefer the loyal employee over the honest one.

Elliott’s is a stunning and infuriating book. It’s lucid, accessible, and urgent. I’ve barely scratched the surface here. The Occasional Human Sacrifice deserves to be widely read and discussed. I thank the author for writing it, and I hope that in doing so he has managed to climb free of the dark hole that an act of conscience and the pursuit of justice left him in.

- - - - - - - - - - - - - - - - - - - - - - - - - - -
*Astra Zeneca was sued in 2009 by patients who were prescribed Seroquel. Unsealed documents from that case revealed that the company had been manipulating research studies to make the antipsychotic appear safer and more effective than it was. Some of those studies involved Charles Schulz, chair of psychiatry at the University of Minnesota.

[Julie Goldman · Rating 5 out of 5]

This book will be meaningful to a certain audience; mostly those like myself, an academic physician and long time IRB member but also those who see wrong and want to right it. It has provoked much introspection for me and hopefully I will become part of the solution rather than part of the problem.

[Emily · Rating 3 out of 5]

This book covered several disturbing cases I hadn't heard of before - definitely worth a read for that alone. However, I wish the book focused more on those cases and less on the whistleblowers. Although hearing about the psychology of whistleblowers (and reactions to whistleblowers) was interesting, I think it got pretty repetitive and I struggled to get through some of the chapters.

[Erica · Rating 5 out of 5]

This book is so good and so horrifying. The author describes a number of situations where whistleblowers exposed unethical medical experiments. The author was himself a whistleblower. He weaves the details of each story with the experience of whistleblowers and bits of philosophy, psychology, sociology, and other disciplines. There is the exact amount of information you need to be interested and informed. This book will change the way you view academic medicine and medical research and whistle blowing. I can't recommend this book strongly enough.

[Andra · Rating 3 out of 5]

I was expecting to hear more about the medical experiment victims than the whistleblowers...

[Una · Rating 5 out of 5]

Holy cow what a book… everyone should read this

[Lily Evangeline · Rating 5 out of 5]

"Like the church, academic medicine has a moral mission that is protected by a complex set of orthodoxies and articles of faith. At the heart of this moral mission is medical research, the practice that is rewarded above all others. Research is what funds the enterprise, what launches faculty members up the hierarchy, and what distinguishes academic physicians from lesser doctors practicing in the community. To question the value of medical research is heresy. To expose its abuses is an act of treachery so grave that it will propel you headfirst into the mouth of Lucifer."

"I was looking for a moral justification for their actions, or at least an explanation. But eventually I came to understand that whistleblower narratives are not so much moral justifications as stories about the self. For whistleblowers, the decision to blow the whistle is a choice about the sort of person they are and the one they want to be. It’s not a matter of what should be done in the abstract. Sometimes it’s not even primarily about the consequences of the choice, although it can be. It is about the personal stakes of keeping quiet. More often than not, what torments whistleblowers is what their decision will reveal about them. They are worried a bout the state of their soul."

"Yet what sets these whistleblowers apart from bystanders is not simply that they saw moral wrongs for what they were. It is that speaking out about the abuses was a real possibility for them, an action it occurred to them to take. For many people, blowing the whistle is a thought that never enters the mind. When I look back at myself in medical school, what separates me from the person I was back then isn’t really a difference in moral perception. Even then I knew, deep down, that it was wrong to perform a pelvic exam on a non-consenting unconscious woman or attempt an invasive procedure that I was unqualified to perform simply because I was told to do it. What didn’t occur to me back then was the possibility of resistance."

This was a disheartening, but also somewhat inspiring read. I'd actually encountered many of the cases discussed before, in a History of Medicine elective I took last fall. What I really enjoyed about this book was the focus on the whistleblowers themselves--who were they, why did they make those decisions, how did it change them, where were they now?

Elliott writes in a plain, earnest way. He does not try to spin positive messages out of depressing stories. He does not try to turn the whistleblowers into heroes. His honest reflections on how his own experiences as a whistleblower changed him were unflinching, depressing, and sometimes painful to read. The cost of his own experience is obvious, and the costs of those he interviews are sometimes much worse.

I think this is a rare book, and one very much worth reading by medical students & medical professionals. He has a line, at the end about how the question of, "What would I do in that scenario" is kind of fake, because the whole process of medical education is one which makes you into the sort of person who can observe something horrific and still sleep at night. Once you are that person, then what choice do you make? And, then, again, it's not a choice, it's about sight. Once you are that person, do you even see the wrongdoing?

It is a sobering thought, particularly as someone in the thick of my medical transformation. The change he speaks of is not altogether bad--it is necessary. You can't work in a field as depressing as medicine and not become proficient at compartmentalization. I had an instructor talk about it once as a kind of spectrum, one where each doctor draws their own line, makes their own decision about how much they will allow themselves to feel and how much they will separate themselves. We can each draw our own line, she said. We can each decide for ourselves, during our training, how much of our "humanity" (maybe not the right word, but you know what I mean) we will lose. But we will lose some of it, that she made clear. Empathy, humanity, whatever you want to call it, it's not synonymous with moral sight, I know that, but I think it is a clue. To feel horror, to feel sadness, to feel anger--these are can be clues that you are facing something which ought not have happened.

The question, I guess, is just one of cost. How much do you decide to lose? and what is it, really, that you lose in the end? How do you know when you've lost too much?

As bad as he makes the case out to be, and even as I'm being trained at a research institution with a history of many medical abuses, I still find myself wanting to disagree with him. Surely, the people who have trained me, the people who care so much about their patients, surely these people would never stand by in cases such as those laid out in this book. Surely they would not. Surely I would not.

[Judith · Rating 5 out of 5]

Carl Elliott's own experience in whistleblowing in the medical research field led him to ask about others. The book examines just six experiments and refers to several others. He interviewed those still living who either blew the whistle or knew those who did. He was trying to get at why they did it, what they expected or hoped to come from their actions, and how they ultimately lived with the consequences.

The quest kept coming back to a personal "honor code". In different but often similar ways, the whistleblowers explained, in essence, that they could not walk away from what they had seen. They said they couldn't live with themselves if they did. Later, when they saw that their actions ultimately changed little, and that they themselves had suffered greatly because of them, they still could see no other path.

Some people report others for revenge or for some benefit. The government's program (Qui tam) that awards money to whistleblowers is supposed to reward those who may otherwise take a financial hit from reporting. It appeared to Elliott that none of the people described here had financial gain in mind, or revenge. In any case, of course, it matters not the motivation of the whistleblower if there is a problem that should be addressed.

The descriptions of the specific experiments are brief but detailed enough to illustrate that they should never have been approved in the first place. Yet they were, again and again, in spite of others' objections and inadequate evidence that they would be safe. This is where the medical "groupthink" comes in. It doesn't pay to be the outlier, despite what we may see on television. Review boards accept the experimenter's statements and explanations, expecting the experiments to be carried out as designed, and not questioning the designs themselves. There is no oversight, there are no observers, and there are no consequences when something goes wrong.

Further, research often rewards the researchers even when the experiments harm patients deliberately. Throughout the world are plaques and statues honoring persons who conducted horrific experiments.

The rewards for whistleblowers are few. It is rare for a real change to take place or for victims or their families to be awarded any compensation - or even an apology. The researchers themselves rarely suffer any setbacks, very rarely see jailtime.

Elliott is not naive enough to offer a glowing solution. We can hope, though, that some medical institutions take to heart the lessons to be learned here and find ways to listen to the objections.

[David · Rating 5 out of 5]

Just to be self-contrarian, I'll start with what I did NOT like about this 4.7-star book. First, it's not every-page oppressive, but for my taste there's a bit too much of the interview-scene-setting thing that authors like to write much more than I like to read (what the person was wearing, whether they had a slightly intimidating persona at first till you get to know them, what kind of beer they were drinking while talking.....who cares? Unless they were riding a unicycle and juggling while speaking with you, just stay focused on what they said and what it means).

Second, and this may be idiosyncratic reaction since I was hoping to use at least parts of the book in my teaching, I thought he could have gone into more depth on the meaning of, and evidence for, his contention that whistleblowers are more often motivated by adhering to a mostly tacit, personal sense of "honor" than by the sorts of deliberative, principle-driven, universalizable (ex: utilitarianism, duty ethics) systems we tend to teach.

Slight drawbacks aside, an excellent read. Describes in detail his own experience at U. Minnesota as well as about 5 other cases of unethical medical research protocols (details of course vary, but probably the prototype is failing to get informed consent for a risky, non-standard approach that ends up being harmful, and then aggressively covering up the truth about it and attacking those who won't go along with the coverup).

Some of the cases I'd never heard of, some i could recite the basic facts in detail (notably Tuskegee study of untreated syphillis), but each was fascinating in large part because of his focus on the whistleblowers, only secondarily on the perps as is I believe more common in such reports. Great, balanced discussion of the rewards and the difficulties associated with standing up (often for a hell of a long time against fervent and scary opposition) for the right. It's not a simplistic story of heroic investigative journalism saving the day or what not, but nevertheless inspiring.